Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.

Tuesday, March 10, 2009

What’s Normal? Six –Month Status Report

In its stretchy way, the six months since surgery have passed both quickly and slowly. Our predominant reaction to this adventure continues to be gratitude: we are fortunate beyond words in both medical details and in our human connections. In the big picture, things are going well and we count our blessings. In the smaller, day-to-day picture, there are frustrations and challenges. The main question they leave me with is “what is normal?”

What do I mean by that? There’s a Dick Francis mystery in which the protagonist is kidnapped. He awakens miserable and confused: cold, sore, tied up and in absolute darkness not knowing where he is or why he’s in that situation. He slowly comes to realize that he’s a prisoner on a boat. He’s seasick and overwhelmed by unrelenting din from the engine on the other side of the wall from his head. He yearns for the intrusive noise to stop. The engine finally does stop and when it does, it’s a relief for a moment or two--and then his other miseries surge to the forefront. In some ways, I feel like that guy: every major symptom that goes away is a wonderful relief, and then I start focusing on the next remaining one, sometimes losing perspective on how very long the distance is that things have already come. Compared to six months ago, life is very, very good. Even in the midst of frustrations, an awareness of how good it is remains. Still, it all leaves me with the question of whether I need to adapt to where things are now or whether there’s still more improvement to come. Having come so very far, with the overwhelming aspects receding, is the job at hand simply to adapt to the remaining symptoms? When does that become the reality and how much longer will it keep improving? As my lovable computer geek crowd would put it, which of the elements in my current life are features, not bugs?

When I moved from administrative endeavors to my current ones, one of the biggest challenges was learning how to be productive in a life not booked hour-to-hour with other-driven tasks. That came along, but “work” still meant going to campus on a schedule that resembled what had come before, except there was no longer any good reason to go in on nights or weekends—staying at home was just as effective because there weren’t people with whom to interact at the office. It took some time, but new rhythms grew over time and they were good. Occasional opportunities that would have involved returning to office life and schedules haven’t been appealing at all: unstructured time and work-sites are terrific, especially given the changed point and product of “work.” (We're not even stopping to talk about how great it is to teach, think and write for a living.) This medical adventure has up-ended all the patterns that had emerged: now my default is working at home, and going to campus is for specific tasks. That’s been an adjustment in and of itself, since my concept of “work” involves going there and being there, and has been for so very long, and because working is so central to my identity.

On the other hand, this new configuration has great features: I really like our house and the working environment in every respect. It’s visually pleasing from the color of the walls to the woodwork to the paintings and furniture. The dogs have more company and seem happier. Most of all, Michael and I really like being able to spend so much time in each other’s company.

Then there are the elements about which the pressing question is, are they permanent or will they recede? I’ve been a voracious reader since childhood and for the last six months, reading and following a sustained written narrative are abilities that come and go. Mostly go. I have read just five or six books in the period, barely a week’s quota from before. We estimate that I’ve watched more video in the last six months than in the last 25 years combined—and that’s from watching a movie on Friday and Saturday nights and an occasional episode of some TV show on DVD during the week if Shea has all her homework done. This changes who I am in a fundamental way and it is a loss. It’s probably not permanent, but it might be. Is this the new normal, or is it just a way-station along the path to full recovery? There’s no way to tell.

Here’s the wrap-up of progress at the six-month point: --the incision is almost completely healed, even the problem spots are vastly diminished in scale and presence--the weird areas on the scalp are much smaller and the sensitivity has lessened dramatically; the surgeon said these are the last symptoms to fade. They’ll be around a while, is our current assessment. Lying down is a problem without my buckwheat pillows.--life is virtually medication-free--my right arm and shoulder are fine in all the forward planes, with the limitations being primarily behind me and in flexibility--my brain seems to do most of what it used to: my personality is intact and most of my faculties. It’s not clear I can write yet, but I can edit and we’re hopeful about the writing.--our values have been reinforced and our human connections strengthened from family to friends--stamina and energy are unpredictable and limited--sensory overload regularly occurs in unfamiliar places, in crowds and with certain kinds of stimulation, primarily visual

It’s all pretty positive, the more so if it’s measured as status six months after hours of brain surgery. The tumor was benign, it wasn’t entangled with my brain and the prognosis all looks positive. We see the neurosurgeon today for a follow-up. Whenever the next scan is, we’ll have a reading for how much the brain is reoccupying the tumor void and whether there’s any indication so far of recurrence. Pending that information, life is good. Thanks for being such a big part of making it that way.

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Our Medical Adventure

In late August 2008, Tina was diagnosed with a large meningioma in her left parietal lobe. It was successfully removed on September 10. The very first entry from September (The Beginning) provides some background information.